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Checking Back in with Lois: How’s She Doing with Fibromyalgia?

separator Fibromyalgia is a complex, chronic condition. It causes muscular aching, pain, stiffness, tenderness and fatigue. The term “fibromyalgia” comes from “fibro,” meaning fibrous tissues such as ligaments and tendons; “my,” meaning muscle; and “algia,” which means pain. The pain of fibromyalgia is typically located in the soft tissues around the joints, in the skin and in organs throughout the body.

Fibromyalgia doesn’t cause joint swelling, the way arthritis often does, so it often doesn’t have visible signs. It can be an especially frustrating condition, because many physicians are not sure how to diagnose it. Patients may find themselves having medical test after test showing nothing is wrong.

A Few Facts

  • About 80 percent of people who suffer from fibromyalgia are women.
  • Fibromyalgia is the most common cause of general musculoskeletal pain in women between the ages of 20 and 55.
  • It does not appear to be related to ethnicity.
  • Nobody knows for sure what causes it, although some researchers, practitioners and patients believe that its onset follows a serious traumatic physical event (car accident, injury, infection) or serious emotional trauma.

Fibromyalgia can cause depression and anxiety. It can affect your family and your work life. Since it’s difficult to diagnose, some medical professionals may even tell you it’s “all in your head.”

Medical professionals believe that fibromyalgia is a life-long condition, although it’s not life threatening. People who seem to do best with fibromyalgia are those who make beneficial lifestyle changes. They change their diet, exercise regularly, learn to manage stress and generally try to find a balance in their lives.

How’s Lois doing with her fibromyalgia?
In the spring of 2002, we talked with Lois, who had had been diagnosed with fibromyalgia about a year and a half earlier.

At that time, Lois had learned, she said, that she could put off for tomorrow what could be done today. In other words, she had learned to prioritize things and deal with them in her own time, rather than all at once. This approach, she felt, helped her keep stress at bay, and in turn, helped keep her fibromyalgia pain manageable.

But life has brought Lois some big changes, as we found out this fall.

“Since we talked,” she said, “my husband was diagnosed with Parkinson’s disease, and he also has dementia now. It’s like I’m back to raising a child. I have to navigate everything for him. People call me a caregiver or care provider, but being married to the person puts a different perspective on it. You have to take care of everything, and that feels like being more than a caregiver.”

Taking care of her husband is taking a toll on Lois. For example, “He can bathe,” she said, “but it’s like when you put a child in the tub to soak. Eventually, you have to follow through on everything he does. He basically needs around-the-clock help.”

Her husband also has painful stiffening of his muscles, which is common for people with Parkinson’s. And he gets frustrated with some of the side effects of his medications. “He has drooling and lack of memory,” says Lois, “and that gets him frustrated.

“Sometimes,” she says, “I feel like going to the highest mountain and screaming.”

There’s also the difficult task of talking with insurance companies about her husband’s paperwork. “I have to pick a day when I’m stable enough in body, mind and spirit to talk to those people,” she says. “I clear my mind so that I can remain civil with them. But I get so tired of them asking me what my husband’s mother’s maiden name was!”

There’s more to take care of around the home now that her husband can no longer do the things he used to do. Lois’s 14-year-old grandson lives with her, and he does help out a lot. But “after all, he’s only 14,” she said. “He takes out the garbage, does his own laundry and keeps his room clean, but he needs to be a 14-year old. It’s not his responsibility to take on the chores of an adult.”

To top it off, Lois will be losing her job outside the home in mid-October. She’s a front desk receptionist at Masonic Eastern Star nursing home in Cincinnati, but they’re closing their doors this fall. “We’ve known about this since the beginning of June,” she said. “It’s stressful. I’ll be unemployed, and this was a job I took because it was part time and it allowed me to interact with people a little bit. I’ll miss it.”

As a result of all of this physical and mental stress, Lois is noticing more trouble with her own body. “I’m aging very rapidly,” she said. “My body is beginning to break down. I’ve being seeing doctors more than ever now. I’m taking more medication for my fibromyalgia pain than I ever used to need. I’m having carpal tunnel flare-ups in my right hand, and I’m back to wearing a brace, which I haven’t had to do for years.”

Lois is reaching a point where she knows she has to make a difficult decision. “I’m thinking about putting my husband in a nursing home,” she said. “At first I went through a period of time where I was seeing everything in an emotional way,” she said. The thought of putting her husband in a nursing home was wrenching. But now she feels she’s explored all of her options, and she’s realizing that if she simply looks at things realistically, having her husband in a nursing home is the best option.

“I have a friend who kept telling me, ‘There’s writing on the wall and you’re refusing to look at it,’ ” she said. “Now I feel like I’m waking up out of my emotional state and facing reality.”

There’s no question that Lois needs things to change in order to take back the ability to manage her stress. “I used to be able to prioritize things and put some things on the back burner. Now, everything has to be dealt with at once. It’s like a snowball rolling down a hill, and it gets bigger the longer it rolls.”

What keeps Lois going these days?

“I have a strong faith, and I hold onto that,” she says. “That really does get me through.”

We wish Lois the best as she goes through this difficult transition time in her life. Peace in mind and heart to you, Lois, as you navigate this phase of your life story.

The National Fibromyalgia Partnership, Inc; W. Salt, E. Season. Fibromyalgia and the MindBodySpirit Connection. Parkview Publishing, Columbus, Ohio, 2004 & personal interview.
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